Daily Migraines 2 Years Post Op

[PepperCat 30]

I can’t stop trying to find answers. I have experienced Migraines for years, but approximately two years after my sleeve surgery I began experiencing intractable migraines and headaches. I have been seeking treatment for years, am in numerous meds, and get botox therapy... and it’s still a struggle. I recently had revision to RNY... but honestly these migraines started initially two years post op my sleeve. Has anyone else had this? They’ve greatly impacted my quality of life.

[NovaLuna 710]

I started getting Migraines about two months post op, but it's not a daily thing. I get one about once a week. But... I can handle it because ever since I had brain surgery in 2017 I get cluster headaches once or twice a month and those are MUCH more painful! It almost feels like when I woke up after brain surgery all over again when I get one... I have to lie in a dark room with a wet washcloth over my eyes and I take muscle relaxers and my TN meds for the cluster headaches (cluster headaches are actually cause by the trigeminal nerve in the... first branch I think, so I had the bright idea to try that and it helps knock me out so I can sleep it off). I DID try Migraine meds, but they didn't help so now I kind of just tough it out...

My mom has something call Vestibular Migraines and they kind of mimic MS and she did the botox therapy, but it didn't work for her. It's a struggle for her every day and I hate seeing like that so I can only imagine how bad it must be for you! I can't imagine having to deal with them every day... I hope they can figure something out that'll work for you so that your quality of life gets better!

[catwoman7 11,233]

I'm wondering if something else is going on - I haven't really heard about Migraines related to WLS. Could it be hormone related?

[MaybeMeow 129]

13 hours ago, NovaLuna said:

I started getting Migraines about two months post op, but it's not a daily thing. I get one about once a week. But... I can handle it because ever since I had brain surgery in 2017 I get cluster headaches once or twice a month and those are MUCH more painful! It almost feels like when I woke up after brain surgery all over again when I get one... I have to lie in a dark room with a wet washcloth over my eyes and I take muscle relaxers and my TN meds for the cluster headaches (cluster headaches are actually cause by the trigeminal nerve in the... first branch I think, so I had the bright idea to try that and it helps knock me out so I can sleep it off). I DID try Migraine meds, but they didn't help so now I kind of just tough it out...

My mom has something call Vestibular Migraines and they kind of mimic MS and she did the botox therapy, but it didn't work for her. It's a struggle for her every day and I hate seeing like that so I can only imagine how bad it must be for you! I can't imagine having to deal with them every day... I hope they can figure something out that'll work for you so that your quality of life gets better!

Hi NovaLuna. What is your TN med that helps your headaches? I've tried Gabapenten but it actually made my headaches worse. Would love insight.

[NovaLuna 710]

Carbamazepine (a.k.a Tegretol). It reacts to sooooo many meds so if they do prescribe it to you make sure you look up every medication you take and any new ones you add. It makes you tired if you take a higher dose of it. It's an anticonvulant just like Gabapenten, but while taking it they have to monitor your Tegretol levels because it can cause issues if your levels are too high. If I have a flair I can take up to 900mg a day, anymore than that and my levels get too high. It comes in both chewable and capsule form, but chewable is best because it works faster. I've taken it on and off for almost four years so I know the ins and outs of it lol. When my flairs were at there worst I also used to take it with baclofen and they work soooo well together!

[ksgypsy 54]

NovaLuna- Many years ago my trigeminal nerve was removed in an effort to relieve my Migraines. The beneficial effect lasted less than a year but others had better success at the time. It was experimental- a Plastic Surgeon had discovered a significant percentage of his patients having forehead lifts who also had migraines reported no longer having migraines. Lost count of how many meds I've tried- like most with chronic migraines. Now on Topamax- 200mg daily & monthly Emgality injections.

[NovaLuna 710]

50 minutes ago, ksgypsy said:

NovaLuna- Many years ago my trigeminal nerve was removed in an effort to relieve my Migraines. The beneficial effect lasted less than a year but others had better success at the time. It was experimental- a Plastic Surgeon had discovered a significant percentage of his patients having forehead lifts who also had Migraines reported no longer having migraines. Lost count of how many meds I've tried- like most with chronic migraines. Now on Topamax- 200mg daily & monthly Emgality injections.

You can't remove the trigeminal nerve lol it goes from your brain, behind your eyes, your upper jaw, cheek, and lower jaw. They can cut it, but they can't remove it. Cutting it is just a temporary solution because supposedly it can heal itself and that's likely what happened to you if it worked for a while and then the headaches came back. I know a LOT about the trigeminal nerve because of my trigeminal neuralgia (a.k.a TN) and the research I did when trying to figure out what procedure I wanted to have. I went the most drastic route and had a Microvascular Decompression (brain surgery) which added a padding between the nerve and the artery that was hitting it and was causing my flairs. It had completely worn away the myelin sheath surrounding the nerve and that was why I had been in constant pain. The surgery was not a cure as there is no cure for TN, but just a temporary fix. Every now and then the padding shifts or something because I have gotten three flairs in the last year though the last one was August. I think my headaches are actually type 3 pain of TN which I never had before my surgery as it was always type 1 and type 2 pain, but I'd take that over the type 1 pain ANY day! (the reason I had the surgery was the debilitating pain from the type 1! I can deal with type 2, for the most part). So yeah, I don't know why the doctor said he was 'removing' the nerve because that was a lie. It can't be done because if it was possible to remove it TN would actually HAVE a cure. And it DOESN'T! Sorry if I'm coming off as rude, but my TN is my sore spot and those months leading up to my surgery were the worst in my LIFE! I was in so much pain and it was constant, I wasn't sleeping, I was barely eating, and everything seemed to make the pain worse. I didn't get any breaks from it, it felt like I was in an endless neverending HELL! There is a REASON TN is called 'suicides disease' and it got so bad that if my insurance hadn't approved my surgery I wouldn't be here today because I would have sought any way out of the pain even if it meant taking my own life! TN is the WORST pain EVER! Nothing compares to type 1 pain! NOTHING! When I started getting flairs again last April I had a complete mental breakdown and couldn't stop crying for a WEEK because I thought it was going to be like before my surgery. My doctor had to put me on anti-depressants and a psyche doc had to talk me down and tell me that just because I was having type 2 pain didn't mean the type 1 pain would come back and that I could always have the surgery again if that happened. It's been a year and the type 1 pain hasn't come back, I'm off the anti-depressants, but have my Carbemazepine on me at all times for when I DO get a flair. If the type 1 pain ever DOES come back I'm immediately asking my primary to refer me to a neurosurgeon at Stanford again or even the one I used before, even though he's at UC Davis now, because I REFUSE to deal with it again! So yeah, sorry you unintentionally hit a sore spot for me...

Edited May 30, 2020 by NovaLuna
spelling error

[ksgypsy 54]

I try to be careful with my words but posting on social media is taking a chance that I may unintentionally upset someone & I apologize for that. It obviously wasn't my intention. But I did learn and I appreciate your explanation of TN. I had not heard of it before. It sounds horrendous beyond words. I have had many Migraines lasting months as well as cluster migraines that made me question the quality of life. I can't begin to imagine your pain.

[NovaLuna 710]

It's okay, we all have button topics and that was mine so don't worry about it! And yes, it's a terrible thing that I wouldn't even wish on my worst enemy! My TN got that bad because it was originally misdiagnosed as TMJ which is a common thing. If you or someone you care about ever is told they 'probably' have TMJ make sure they get check for TN too! Narcotics medication doesn't work for Type 1 pain though it can help with Type 2 so that's a sign if they have Type 1 pain and no amount of pain meds is helping. My own experiences helped a co-worker whose grandaughter was suffering facial pain and after hearing and seeing my own issue with it she had her grandaughter checked out and sure enough she had TN. After that knowing that my own suffering helped someone else get diagnosed made me feel better.

And I'm incredibly sorry about your headaches! I rarely get the cluster headaches since they only happen once or twice a month so I can't imagine how terrible it must be to get them frequently! You can't just sleep them off like I can since mine happen so rarely... Quality of life for people with pain conditions sometimes just really sucks because you just want to be 'normal' and pain free but it just seems impossible at times and frustrating as hell! I can only imagine how bad it is by my experience with my mom. She gets so miserable and has days where she can't get up from bed because her head hurts, she's nauseous, dizzy, and has no appetite at all. I hate seeing her like that, but at the same time I have so much appreciation for her because I don't know how to help her when she has those days and yet when I was suffering for almost a year when my TN was at it's worst she was the one that made me fight the urge to just find a way to escape the pain because she was always there for me and went with me on my NUMEROUS ER visits and hovered and tried to make me feel better when I was sobbing my eyes out from exhaustion and pain. My mom is amazing and it hurts to see her suffering like that! I'm sorry that you're going through something like that yourself! I hope the meds they have you on now work!

Edited May 30, 2020 by NovaLuna